- “I noticed my child’s eye looked like it was ‘lazy’ — like one was looking straight at me and the other was off to the side.”
- “I noticed a white glow in my child’s eye in a photograph I took.”
- “My pediatrician diagnosed my child in a routine exam.” (sadly, not commonly heard)
- “I thought my toddler was bumping into things more than he should, so I brought him in to see the eye doctor.”
Most families say they had never heard of retinoblastoma prior to their diagnosis. Cancer? Of the eye? I didn’t even know you could get cancer there!
J was diagnosed with retinoblastoma just after her 2nd birthday. For a few months, we had noticed her right eye was slightly off center. But, according to all the parenting magazines and articles we read, we were told that was ‘normal’ – that the eye muscles in a child are not well developed and can be off center. So, naturally, we did nothing about it. As the first child, J was photographed at nearly every opportunity, and yet we never saw photos of leukoria (the “cat’s eye” look).
After about 8 months of watching her eye move from the center to slightly misaligned, we finally called the pediatric opthalmologist in Boston to take a look at her. Within minutes of his examination, the doctor sat back in his chair and said, “There is no easy way to tell you this. Your daughter has cancer. She needs to have her eye removed immediately in order to save her life.” Disbelief. Shock. Pain. Nausea.
Before we knew it, we were being whisked away to Massachusetts Eye and Ear Infirmary to see the surgeon who would officially diagnose her and remove her eye. We discovered that J was in Stage 5B – meaning the cancer had reached the base of her optic nerve and had completely shattered her retina. The doctor told us that J likely had been blind for the past year, but we just never knew it. We were coming to him just in time.
J was on the operating table in less than 20 hours from the time we found out she had cancer. We didn’t have any time to process this nor really participate in the decision – it was that serious. J’s surgery went 
well, and while it was deeply emotional at the time, the pain has certainly subsided, especially because, today, I can now hug and kiss my 5-year old daughter. Within 20 hours post-surgery, J was up and running around the neighborhood with a patch on her face, a Superhero cape on her back, and was riding around the driveway on her red tricycle! She did great!
In September, just 6 weeks later, we found out that J needed chemotherapy due to the fact that they found cancer cells at the base of her optic nerve (which, could possibly mean there were cancer cells that had travelled into the rest of her body). We began chemo within a week and were set up for a course of 6 months of carboplatin, vincristine and VP-16.
Every family will have a different set of treatment depending on the condition of the cancer, so I won’t go into detail about what treatment was like for us. I will say that we stayed very positive, and we found that empowering Joli was the best GIFT we could ever give her. We didn’t baby her or coddle her. We were sensitive, supportive, encouraging, and realistic with her. Naturally, she began her journey as a very frightened 2 year old who screamed and squirmed, and by the time she went to have her port-a-cath removed (18 months later), Joli walked HERSELF into the operating room! I’m not kidding! She honestly walked herself into the OR, said HI to all the doctors, requested that she have the bubble gum flavored mask, and kissed me goodbye. Joli was 3 years old.
Diagnosis and treatment are scary. There is no doubt about that. If you are a new Rb family, I hope that you reach out to other Rb families to get some perspective on how to deal with the diagnosis, treatment, and all the challenges of raising a child with cancer. While friends and family are amazing and necessary for your support, connecting with other parents is priceless — even if it’s just online.
To connect with a parent or for support, please email Liza(at)rbne(dot)org
